NEGUA Gala 2017 & More...

Friends, I cannot say enough wonderful things about the NEGU Gala last Saturday night. It was held at the Disneyland Hotel and took up many a ballroom- including the main one with the stage and dance floor. It was an absolutely beautiful evening with fancy clothes, yummy food, fun raffle prizes, and insane auction, and dozens of wonderful Courageous Kids and their families.

Enjoy some photos:

All dolled up and on our way.

Mommy and dapper Dempsey.

Daddy and Sawyer.

Dempsey and other Courageous Kids on stage with Mickey Mouse!

Keeping busy during a boring section of the program.

Look out ladies! So GQ.

The fanciest family photo we've ever had.

Dempsey eyeing his Michey cupcake for dessert.

Watching a clip of Jessie.

Dempsey holding his Jessie (award). He didn't want to let it go!

Dempsey was noticing the image distortion from glass angles.

Look how he's holding that Jessie award. Precious.

Mommy and Sawyer.

The most prized take-away from the Gala.

If you have not familiarized yourself with NEGU and the Jessie Rees Foundation, please take some time to visit their website: www.negu.org. Jessie was a remarkable young lady this world lost too soon to the dreaded DIPG. But all was not lost as Jessie's legacy marches on... carried by her family and hundreds of people who loved her. Please, share the NEGU mission and message of love, encouragement, and care to those kids fighting cancer.

I happened to win a raffle prize myself. A Harvey's handbag. I've loved these bags since I discovered them 100 years ago. Back then they weren't so popular... or pricey. This is hands-down the most expensive bag I've ever owned... it's in the wrong color... and I LOVE IT.

So, I mentioned the auction... one of the items was something to do with Kobe Bryant. I think it went for something like $4,000. Another items was a week in Tuscany... again, somewhere around $6,000, I think. Then there was this adorable chocolate lab puppy. Y'all will NEVER guess what that puppy went for.

Just guess.

$2,000?
Nope.

$4,500?
Nope.

$7,000?
Nope.

$10,000?
Getting warmer.

$14,000!!!

Think about that next time your child asks for a puppy. :-) Personally, I think that dog should have come with a car! Hahahaha. Such a great cause to support!

_____________________________

Then there's today's conversation with Dempsey's oncologist.

FINALLY- she has come to the conclusion that Dempsey cannot handle 100% dose of the chemo drugs he's required to take. PRAISE GOD! It took his liver enzymes skyrocketing twice and a special vial (from labs) to test his thiopurine metabolites (6MMPN).

Normal metabolite levels are <5,700.
Dempsey's levels were 7,390!

So, needless to say, his metabolites were high. This is not good. If he stays at this level hepatotoxicity (toxic liver) is a real danger. This PROVES what I've been saying for months. His liver cannot metabolize the 100% dose and he needs a lower dose.

Now, a doc called me last night to tell me his labs from yesterday were good and we were to resume chemo at last known dosing. Um, no! Last known dosing was what sent his enzymes into orbit. I refused to do what this doc, who is not even on our team, told me to do. I tried to explain that I would continue his meds at 75% dose, as that was the last dosing where his liver enzymes and all other labs were happy and stable. There was a clear language barrier. She gave up and said she'd have our ONC call us. Well, our ONC never called last night.

Knowing that we needed to resume chemo I made the decision, and ran it by Jake, to resume Dempsey at 75% dose until we heard from our primary ONC.

Fast forward to today's call... our ONC said we could resume at 50% and then titrate up in 10% intervals. I then explained what I had done last night- the whole 75% dose I mentioned- and she agreed that was a good choice. She validated that 75% dose was the last dosing level where his levels were all stable. Fwew. I did it! I was right. I knew his liver couldn't tolerate 100% dose and I managed to protect my baby until our ONC called with the thiopurine metabolite results. I will continue doing exactly what I've been doing for almost a year.

So, we will march forward at 75% dose. We will check labs every two weeks at first and then probably once every month or two. We do not need to test his metabolites again, unless we feel we want to revisit that in a year or so. Doc thinks Dempsey's "magic number (%)" for dosing is between 65-80%- 75 clearly meets that criteria.

I'm wondering if Dempsey's ginger gene expression is also at play when it comes to metabolizing this drug. I know I read that gingers metabolize differently than the rest of us- just the way the genes work- and that was definitely true when it came to pain meds in Induction.


PRAYER REQUESTS
Pray for miraculous healing
Pray continued protection over all his organs
Pray special protection over his boy parts (testicles) because secondary cancers often arise from that region post leukemia treatment
Pray over our marriage
Pray over Sawyer and all his facets
Pray over our life- many desires have been put on hold
Pray over our finances- that we may wise stewards of the blessings God conitnues to send through all of you
Pray over the doctors- pray for open minds, hearts, and eyes
Pray that we will always seek to do God's will and follow the Holy Spirit's promptings
Pray that we will feel "normal" and confident in that new definition
Pray against negative side effects
Pray against PTSD
Pray against anxiety
Pray against anger
Pray against negativity
Pray for a right perspective
Pray for generosity
Pray for transparency
Pray that we don't waste a single moment/ opportunity of this journey
Pray that we remain strong/ vigilant with his at-home protocols
Pray for wisdom
Pray that we may affect change in the protocols for cancer kids
Pray protection over our family- outside forces be kept away

I've Been Quiet

Hello Team Dempsey fans.

I know, I've been quiet for 11 days. I guess I just don't know what to say, what to share, what to ask for, etc.

Yesterday (Friday) Dempsey and I went BACK to CHOC clinic for another lab draw. It was supposed to be a draw for the "thiopurine metabolite" test. However, when our nurse, sweet Lindsay, came in with the tray I happened to mention the special vial. She looked puzzled. She checked and rechecked the orders. Guess what, there was NO TEST ORDERED. What the hell? I'm already so livid with our ONC and she didn't even manage to put the order in the system. So he had enough blood drawn for a regular lab- which he had just had drawn THREE DAYS previously- and this thiopurine madness. I'm serious, my eyeballs are gonna get permanently stuck looking at the back of their sockets by this journey's end.

I think it was divine leading, me taking Dempsey. Jake was all set to take him but tears just about fell when I told him Daddy was going to take him, even though he wanted me to go. So, I quickly got dressed while Jake finished prepping his port area and got him dressed. Then off we went. I don't know why I mentioned the thiopurine test... I couldn't have told you a vial was missing. But I'm grateful God is working in this mess because HE made sure our trip wasn't wasted and that Dempsey wouldn't have a needless poke so soon.
I'm not saying Jake wouldn't have done the same... only saying that it felt like God was in it.

Run down-
Jake and I were in Escondido Monday through Thursday.
The boys stayed with my folks.
Granddad took Dempsey to his Tuesday lab draw.
Tuesday aftenoon our ONC called and left a message asking me to call her back and discuss Dempsey's liver enzymes- they were still high.

Lets start back up right there, with his ONC... HIS LIVER ENZYMES ARE STILL HIGH. Granted, they are lower than 1,000 but still in the 700s. She would like me to send her a list of all the supplements and essential oils we're using. I'm not sure I want to share that information. Why?

1. Nothing has changed in 11 months of treatment.
2. She wouldn't understand what I did share with her (admittedly she would involve another ONC on the "team")
3. It's not the natural stuff that's the problem... it's the natural stuff that has made his journey exceptional thus far.
4. I don't want to open myself up that way because there is no telling what drs will do with that information. Plus, it's out there for the world... so... if they want it they can find it themselves- much like I'm having to do with all my research to PROTECT MY SON.

I could go on and on... but I don't want to.

On a more positive note, we are SUPER grateful for you continued prayers and support. The generous gifts keep flowing in, slower but still just as we need. God is so good. My biggest fear is still that y'all will stop praying and we still have 870 days until EOT (end of treatment). That's a long time, friends!

I posted this the night Jake and I came home from our much-needed getaway.

Marriage: where 1 + 1 = 4 (or however many offspring you are blessed with- bio or not ❤)

My lover and I just got back from a getaway. We were blessed by friends for the accommodations, my parents for willingly keeping our angels, an ex-military man turned part-time server with some wonderful conversation about tattoos & leukemia, the SDWAP for giraffe feeding (see previous posts), a Canadian oncologist who held my arm & told me "your son is going to be just fine" as he stared into my eyes, and a complete stranger who paid for our coffee at a café because we "looked a little lost".

So, when you've missed your monsters you celebrate your reunion with froyo and have a short, delightful chat with a friend you run into in the parking lot as he fetches his wife some VIP postachio froyo w/ yogurt chips.

Praising God. Good night.

Here is a peek into how Dempsey communicates-

Please continue to share Dempsey's story with anyone and everyone. You just never know who needs to hear about it and perhaps implement some of what we do to their own cancer journey. We hope that we can always be salt & light to this world while we are on this journey God allowed us to travel. We love you. We need you. We appreciate you. May God bless you, each, so deeply that your heart cannot contain the joy.

One Person at a Time

Jake and the boys came home from a Costco trip and Jake told me the following:

Jake: Guess who convinced a woman at Costco that she should get the organic apples instead of the non-organic apples?

Me: I want to say Sawyer but I have a feeling it was Dempsey.

Jake: It was Dempsey. He saw she had the non-organic apples in her cart and he asked her "Why don't you get the organic apples?" She stated she liked the smaller size of the non-organic apples... but by the time we parted ways she said "I think I should get the organic apples."

That's right! My 5 yr old encouraged a grown up to make the better choice.

With the right heart, how could you encourage someone to make healthier choices? What healthier choices do YOU need to make?

Maintenance || Phase 2

Okay.
So.
Um.
Well, Phase 2 of Maintenance started today.

What does that mean...
He had his port accessed (needle in chest), sedation, another lumbar puncture (needle in spine) with an injection of methotrexate (chemo- MTX) into his cerebral spinal fluid, and an infusion of vincristine (chemo).
He starts 5 days of steroids tonight and continues his nightly mercaptopurine pill (chemo- 6MP).
He will have weekly doses of oral MTX on Tuesday throughout this phase.

This repeats two more times (once without the lumbar puncture): in one month and then in two months.

Nothing new will be added in this Phase- praise God.


Dempsey had planned, in advance, that we would go to Chick fil-A for lunch after procedure and then to the Santa Ana Zoo. So, we did just that. It is always remarkable to see him RUNNING around after having a needle in his back just hours prior. God is so good. I really do try to lean into Dempsey on days like today. Let him lead. If he's okay, I work to be okay. If he's not okay (rare), I work to be present with him in that.  He did end up falling asleep on the drive home and we let him sleep at home too- 3 hrs. Hopefully he sleeps tonight.

The zoo brought a beautiful gift from God just for me. I was watching this lovely mom and her precious daughter on the playground. I told Jake, "I know her." He chuckled because of course I did. I called the mom's name and she looked around. I stood up from the bench I was occupying, raised my sunglasses, and she about had a heart attack. Such a big bear hug! The kind of hug someone you've known you whole life but haven't seen in at least a decade, maybe longer, gives. It was THE BEST! Of course we talked and talked and talked. I'm not sure if Jake was jealous or elated about his alone-ish time. So much has happened in both our lives and yet the encounter was as comfy as fuzzy slippers. We just slipped back into the connection of our youth and marveled at the hands life has dealt us.

Oh, I should let you know that Dempsey's liver enzymes are back above 1,000 again! *Infuriating* The doc says "we'll keep the 6MP at full dose and watch and see what his labs are next week". Um, my child isn't a science experiment!! Y'all, I need Divine guidance here. I'm about to lose my $#!&. This is the SECOND time his enzymes have skyrocketed and I KNOW it's because of his MTHFR mutation and the dosage of MTX/ 6MP he's receiving. I'm so livid I could spit. I'm planning to print out a bajillion studies showing the correlation and causation between MTHFR & MTX/6MP dosing and toxicity. The docs have to listen, right?

Pre-procedure

Post-procedure

Drive to lunch

At Chick fil-A (drama boy)

At Santa Ana Zoo

At home catching "zzzzz"

PRAYER REQUESTS
Pray for wisdom
Pray for truth to make itself visible
Pray for intentionality
Pray against negative side effects
Pray for strength and courage
Pray for health
Pray for opportunities to share about holistic protocols and the Lord
Pray that doctors will be open minded
Pray that ears will hear and eyes will see
Pray protection over Dempsey's liver
Pray that we will never miss Divine Appointments
Pray that we make the right decisions
Pray for peace and endurance
Pray for recuperative rest
Pray that my (Coral) PTSD would vanish
Pray for open doors
Pray that we will always keep a Right perspective
Pray for our marriage
Pray for Sawyer's brother-heart
Pray for advancements in childhood cancers
Pray for Divine partnership opportunities
Pray as you feel led

Fundraising

PayPal.me || YouCaring

Upcoming

Tuesday March 7th:
Dempsey has another lumbar puncture with IT MTX (chemo injected into his spinal fluid)

Currenlty there is a book drive running through Usborne Bookes and More. Get in on the action before it ends- March 11. Click HERE to be taking to the book drive site and shop till you drop. Plan ahead and even make a list of those you could buy beauitful and fun books for:

• your kids
• your nieces and nephews
• your grandkids
• babies who are on their way
• your students
• your church's early childhood department
• your own personal library
• neighbor kids
• friends' kids
• your little siblings
• coworker's kids

March 25th is a busy day:

• Lula Roe Fundraiser for Team Dempsey by Erika Radel at 10am. If you are interested, message me on Facebook and I will add you to the private event. There will be an online option for those out of state or unable to make it in person. If you want to go in person, contact me for the address. It's in La Habra.
• NEGU Gala at the Disneyland Hotel
  We are going as CHOC's special guests! Woohoo. Please be in prayer about the connections we will make at this event. Pray that we will also be a light to those that need it. The Jessie Rees Foundation is a remarkable organization. If you are unfamiliar, please visit their website or Facebook page to learn about them and then SHARE, SHARE, SHARE them with everyone so no one is left in the dark- or without JoyJars®.

Friends, we are so thankful for your continued love and support. Your prayers are instrumental in the success of this journey for Dempsey and the rest of us. We are aware that this journey is unlike the normal journey for cancer kiddos and we are grateful. As it stands, we still have 882 more days of treatment. You can see that we still need you! :-)

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Personal Fundraisers for Team Dempsey

PayPal.me & YouCaring

Usborne Book Drive for CHOC in Honor of Team Dempsey

Readers,

PLEASE help us help the CHOC cancer clinic and the Child Life Department boost their inventory of NEW books (never used, it's a germ thing)!

Often times these poor kiddos are hooked up to tubes and power towers for hours on end. Wouldn't it be awesome if they could pick out a book for themselves to read or an activity book to help pass the time and distract them, even for a moment, from their sad reality?

That is exactly what Team Dempsey wants to do. We have partnered w/ a fellow cancer mom to make this book drive happen and WE NEED YOUR HELP! Not only will this drive benefit CHOC, it will also benefit this mom, AND one of my most favorite organizations- MaxLove Project. It's not offen that we are given a "win-win-win" situation but this is certainly one for the books. See what I did there? 

Follow this link and shop away!

https://1111268.myubam.com/

Here's how this works:

-You can order for yourself, and Usborne will give a 50% credit, for me to shop with. 

-You can order directly for the drive, with FREE shipping, AND a 50% credit for me to shop with. *Choose "ship with organization" at checkout, to use this option*

Thank you for making a difference in the lives of these precious kiddos fighting cancer! ❤

Please share this post with yoir social network peeps and even email it to all yoir contacts so we can maximize the benefit of this drive.

Cheers & God bless,

Team Dempsey

Fundraising Update

A few people have asked where we stand on our fundraising endeavors. Here is a little image and then an explanation of a bigger picture.

*these figures are for 2017 forward

I know that I stated $15,000 was our annual goal in a previous post, but I really think it's closer to $17,000 as we factor in the cost of his supplements. I've also included a conservative estimation of this entire journey's cost to us (out of pocket).

I have checked over our various fundraising avenues and it looks like this is a close representation of the funds Team Dempsey has received this year.

In order to give you a more accurate depiction of this financial journey, I will need Jake to do some research into the billing side of things. I hope to update this post, or create a whole new one, in the not-too-distant future. *updated to reflect all donations we have record of*

Keep in mind, this is a marathon... we still have 885 days of treatment. We will need to raise this amount again for 2018 and again for 2019. *Note: my pride is warming the bench**

We are praising God for his complete protection and provision of our sweet boy (and family). Dempsey still hasn't suffered any of those pesky negative side effects. Sure, he's allergic to a class of drugs and we had that liver enzyme issue... but nothing has landed him back in the hospital like we were told they would- and frequently. God is so good!! He is answering your prayers the way we want them answered and that is awesome. Still, I live in daily fear that the other shoe is going to drop. The doctors did their job in evoking enough anxiety for me to take this journey seriously and that means I cannot fully enjoy the blessing of Dempsey's AMAZING health/ strength because I am always expecting the doctors words to come to fruition. You could pray about that for me.

Our fundraising endeavors are listed below:
PayPal.me/coralkenagy (select "friends and family" and 0% will be deducted from your donation)
YouCaring
Many have given check to us personally and even envelopes of cash.
I'm hoping to do an Instagram fundraiser in April to commemorate the anniversary of Dempsey's diagnosis and perhaps another Chick fil-A fundraiser for the anniversary as well.

PLEASE LET ME KNOW IF YOU ARE INTERESTED IN COORDINATING/ HELPING WITH ANY FUNDRAISING OPPORTUNITIES!!! Help is always welcome and appreciated.